(The following op-ed article appeared in the April 28, 2006 issue of the Asheville, North Carolina (US) Citizen-Times:)

Each April, I receive a flurry of announcements regarding Autism Awareness Month. As the parent of an autistic young man, and as an autistic person myself, I take considerable interest in what is being said about it.

This year, one in particular caught my notice: it mentioned a promotional tie-in with an organization called "Autism Speaks." I knew nothing of this group, so I visited its Web site, and got quite an education. I was told that my way of experiencing life is seen as a "cruel embrace" that needs to be conquered and cured, and that achieving this goal would change my future.

It certainly would: the person that I am would cease to exist. The life I live a day at a time, with its rich mixture of challenge and accomplishment, its moments of startling clarity and insight and its times of frustration and exhaustion, its joyous celebration of the simplest things so many others ignore or take for granted - this life would vanish. In its place would be... what? "Fitting in", conformity, following the masses, keeping up with the latest styles and entertainment and distractions... joining in the social games of status and "who's in and who's out" and whose clique is the most popular... and just possibly wondering in the midst of having so much and doing so much why there's a nagging feeling of something being missing and thinking, "Is this all there is?"

I don't mean to indict all of conventional society; it's just that it looks so easy and tempting to go on autopilot and become so wrapped up in what "everybody does" that the deeper issues of meaning and purpose could be indefinitely set aside. If things come too easily, how much are they valued? In contrast to this, I find myself appreciating so many of the "little things in life" - a successful and cordial interaction with a store clerk, a shared smile with a passing toddler, the sensory delight of a Spring day - that my ongoing struggles to communicate and understand and learn are richly rewarded. My son's eleven-year experience in therapeutic foster care is leading him in the directions of service, living in community, and valuing others' natures, however different they might be from one's own.

In what I speak and write, I try to emphasize the shared responsibility of people on as well as off the autism spectrum to work toward improving our quality-of-life. The way things have been, and often still are, leaves much to be desired. During the years before my own autistic son started receiving the support and services he needs, we were desperately unhappy, and fearful of the future. So I'm sure not suggesting that everything is fine as it is. My son's path has led through uncontrolled aggression and self-injurious behavior, and mine through many years of active alcoholism until I started getting help (eleven years before I was finally diagnosed with autism). Suffering for suffering's sake does not appeal to me, and life with an autistic person (or as an autistic person!) can be very hard indeed. Frustrations may abound. But it still doesn't follow, for me, that the best way to deal with autism is to eradicate it. Autism is not something which conceals my "true nature" behind some impenetrable barrier - rather, it informs my nature and is an inseparable part of who I am. I welcome support and understanding and resources in trying to be the best "me" I can. It is my responsibility, and opportunity, to learn to navigate in nonautistic society as best I can and genuinely try to meet others partway. There is plenty of work to be done, and I feel we all need to pitch in as best we can. This road is far more difficult than the one involving a hypothetical cure, but it can bring people together for support and understanding and shared courage in ways that might not otherwise happen, and lives are enriched because of it.

To me it is a sad irony that the organization is named "Autism Speaks", when the voices of autistic people are nowhere to be found on its website (see footnote below). Rather, others undertake, in all sincerity and with the best of intentions, to speak for what they believe are our best interests. But as long as autism and quality-of-life are seen as mutually exclusive, where one or the other can be present but never both, then it becomes impossible to value the contributions that autistic people can make, or to accept that autistic people might prefer to live difficult-but-satisfying lives which express their natures. Evidently I should hang on as best I can until I am cured and get my life back. But I love the challenging, productive work-in-progress life that I already have. It takes everything I've got. I think that's how life is intended to be.

(Note: the "Autism Speaks" website has since been expanded, and this is no longer the case. However, I feel the rest of this paragraph remains valid.)

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last modified: July 5, 2006